This is going to be incredibly long, so bear with me, but I’m just really feeling the need to process some things right now and I like doing that best by writing.
My 9 year old sister was the sweetest girl you’d ever meet. She loved Disney World and the Fresh Beat Band. Her laugh was the most infectious thing you’d ever hear. She loved music, more than anything, I think. I’ll call her Nell.
Nell died in October of 2016. I was a freshman in college. What’s awful is that it wasn’t much of an unexpected thing, because Nell had always been sick. When she was first born, my mom promised me at the hospital that I could hold her when she got home. I was 8: her word was gold. But Nell was quickly put into an incubator like a chicken and didn’t come home for nearly three weeks later, an eternity in my mind. The day she was born, we found out that she had Down Syndrome.
I don’t remember much of that first year, I was just a little kid. I made a PowerPoint Presentation about Down Syndrome and presented it in front of my class so that I could tell them all about Nell. I knew it would be hard, but none of us thought it would be devastating. I kind of thought it was cool, in ways. Nell was an adorable baby. I liked to change her diaper, when my mom would let me. And she was my littlest sister. I loved her. She didn’t look like there was anything wrong with her. She just looked like a baby.
And then it started. The first time I remember it being scary is when our family was at church one morning. Nell wouldn’t stop spitting up. It was all over my mother’s dress. Every baby spits up sometimes, we tried to reason. Maybe she’s sensitive to certain foods. We weren’t sure. But Nell didn’t spit up just some things. She threw up everything, all the time, violently.
My parents took her to the doctor. She came back with a tube up her nose meant to transport formula down to her stomach. We fed her blueberries and coffee ice cream.
She threw up the blueberries and coffee ice cream.
Eventually, the doctors took the tube out of her nose and cut her stomach open to put the tube directly in there, since it seemed like it was going to be a pretty permanent thing. Sometimes, she threw up the formula.
Alongside Nell’s gut issues, there were myriads of other conditions to handle. Forgive my childhood memory, but let’s fast forward a few years to 2010, when Nell was three. She had hearing aids in both ears, pink ones that she hated to wear. (It was a good thing she had good eyesight, because I can’t imagine her wearing glasses for more time than you can imagine a cat wearing glasses.) Her teeth grew in a funny way. Some of them we dubbed her shark teeth, because four of them grew, two front teeth and two more front teeth directly behind. We didn’t care. She was beautiful. She was my little sister. She liked to play with dolls and she loved to walk around with her tiny backpack full of formula on her back. My mom had to custom-order tiny backpacks. She was dressed every day like a princess. Her hair grew in a funny way, patchy and thin. My mom put it up in pigtails every day. She was beautiful.
Her hands were very small, her skin was mottled at best and yellowish at worst. Towards the end, she looked yellower and yellower every day, like a lemon, or a banana with an expiration date taped over it. Her heart was weak, with a murmur. She was asthmatic, with bad sleep apnea. Her muscles were weak no matter how hard she tried to build them up, and she could not walk well because her ankles were badly built, without the strength or the tone to hold her up. She wore thick plastic braces on her feet that almost no shoes could fit over except for cloth, child-sized Converse, which she wore almost every day in every color of the rainbow. But she hated to walk and didn’t have the stamina for it, so we pushed her around in a custom pink wheelchair with her name sewn into it.
She was not very smart. But she was all heart. She could talk using some words and fill in the gaps with sign language and expressiveness. And my God, was Nell expressive. She loved to let you know how she was feeling, and she was so sassy. We took her to therapy a few times a week. We could talk to her, but not everyone could. It made me feel special.
I cannot express to you the love that we felt for her.
I’ll be honest, because this is long and I’m putting my whole self out here. Sometimes I look at people with disabilities and it’s difficult to see the whole person instead of seeing just the disability. I try, but sometimes it seems impossible not to gape for a second. But I always saw Nell first. I never saw the wheelchair or the tubes. It was extremely enlightening for me to realize that Nell was no different than anyone else.
But she was a little different. Because she just kept getting worse. She stopped tolerating the formula feeds. The doctors repositioned the tube so that it would go straight into her small intestine and bypass her stomach, which worked for a little bit. And then she stopped tolerating that. Eventually, she was given something called TPN, nutritional solution that is pumped directly into the bloodstream. It worked.
But TPN comes at a cost. It’s detrimental to your liver, and not a good idea for the long term. We didn’t have any other options, and Nell was only four years old. It was a short-term fix with lasting implications. Nell’s life was in danger.
And then someone offered a cure. There was a doctor who referred us to a hospital that provided transplants. Nell was put on a transplant list for a small bowel. In early 2012, Nell’s name was called. My parents drove to the hospital for the transplant. The surgery went well. Nell was still in the hospital, but she was walking, and smiling. She looked like she felt great. All of us were elated and hopeful. But then Nell went into withdrawal.
For nearly two months, the doctors tried their best to save the organ, because they knew there was no other option for Nell in the long term. After performing one organ transplant, it becomes much harder to perform another due to the antibodies you develop. Nell almost died. She was in an induced coma. They cut a hole in her throat and put a tube called a trache in there so that she could breathe. She grew brain lesions.
She did not die. In June of that year, she came home from the hospital. But she wasn’t exactly the same Nell. She was tired, and listless, and didn’t seem to remember all of the same things. And she couldn’t really talk anymore. She couldn’t walk, either. She still had the breathing tube in all of the time.
She lost most of her language and her ability to move from the transplant, and came back still on TPN. It was absolutely heartbreaking. My parents applied for another transplant, but they were rejected due to the high chance that it would not work. Nell kept getting infections in her tube, and every time that happened, a potential slot for placing a TPN line closed. She was running out of slots, and out of time.
My parents tried to delay it for as long as they could. But one day, Nell’s last vein got infected. The only options left were extreme: placing a tube that ran out of the bottom of her spine, or the top of her head. The doctors recommended hospice. My mom cried and fought, but ultimately, I think they were right. Nell died (I think officially of heart failure) in October of 2016.
It changed me, I mean really. First, it changed my relationship with food entirely. Nell made me realize that food was powerful, and a tool to be reckoned with. That insatiable curiosity regarding food combined with the difficulty of being the sibling to a child with a severe disability led ten-year-old me down the rabbit hole of bulimia. My parents found out, and I missed most of high school in treatment for it. I still graduated and am (mostly) recovered, but it hugely impacted my adolescence and still haunts me on certain days. My outlook on life has thankfully completely changed.
At the same time as this, my brother developed psychosis. He was fourteen. He was in and out of real mental hospitals, not the cushy art-therapy treatment centers built for anorexic girls. Visiting him was much scarier than visiting Nell. But she was still there too, through all of this.
It turned out that after Nell died was when things really went to shit. Things hadn’t been great while she was alive – we knew that she was going to die, but we all loved her so much and felt so grateful for our time with her every day. But it turned out that she was actually the one thing holding our family together.
My dad turned to my mom. He was devastated about losing his youngest daughter and wanted to lean on her. But he held too tightly, and she wanted to be free. She had felt burdened with the weight of carrying Nell: all the doctor’s appointments and hospital stays and long nights awake. My mom had always wanted to be a doctor, but she never expected it to come like it did. Now she finally had the chance to. For whatever reason (I still don’t really understand) she laced up her running shoes, learned to run a half-marathon, and started an affair with Nell’s old nurse. In December of 2016, she left my dad, on Christmas Day.
It should be noted that I’m the only person who knows about the affair.(I was sneaking on my mom’s phone. When I confronted her, she denied it. They’re engaged and I’ve never discussed it since, except with my therapist.)
My dad was alone. In the span of three months, he had lost his youngest daughter and the love of his life. He overreacted. He did what anyone would have done. He tried to win her back. He got obsessive. He showed up at the airport for her, trying to make some kind of grand gesture like it was the movies. Instead my mom reported that she “had to act like he wasn’t even there.” I knew that my mom didn’t want to be with him, and I even tried to tell my dad that. But his heart was breaking. He yelled at her, he cried, he offered desperate deals.
I don’t know if my mom was trying to compensate for how guilty she felt about her (hidden) affair, or if she truly felt that it was the case. There’s evidence for both sides. But either way, she retaliated by accusing my dad of being emotionally and sexually abusive, and moved out of the house.
It should be noted that around this time, my brother began seeing a new therapist for his psychosis, the only provider who would accept him outpatient in our area. We’ll call her Lacy. Meanwhile, I started smoking weed at college with my cool new boyfriend and his friends, which seemed like a decent replacement for the get-really-drunk-on-grape-vodka-and-fuck-a-frat-boy coping mechanisms that had made up most of my first semester.
I don’t want to discount the other side of my family’s story, and I will try to relate it as best I can from that perspective as well(holy shit if you are still reading…I commend you), but here is how I experienced my father, growing up.
My parents were high school sweethearts. They both grew up in Jacksonville, Florida; my mom was poor, living with her mom and sister on the bad side of a divorce, and my dad was from a first-generation-rich, southern Navy family. (We are all white as fuck.) My dad went to the Naval Academy, hoping to follow in my grandfather’s footsteps. My mom pulled a full scholarship by working her butt off in school and climbed out of the cycle of poverty with her nails. They got married right after college, and had me a little less than a year later, in 1999. They were young. My mom was a crunchy lady on the early end of the Internet, my dad was mostly deployed. I remember visiting his airplane once, but I didn’t see him much at all until I was about five, when he got a job teaching ROTC at a university.
Those are the good times. Nell wasn’t born yet, and most of my siblings were very small. I was homeschooled (Thanks mom!) until the 3rd grade, and I remember sunny days with my dad, walking around campus (which seemed like the most magical place on the entire planet to my young eyes.) We went hiking, and swimming, to flower-gardens and children’s museums. He helped me set up a Gmail account, and I would send him crazy emails (my 6-year-old google habits would make a hilarious reddit thread). We watched Star Wars and my dad even let me stay up late, all the way until 9 pm. Then we traipsed down to the swampy area behind our house and named it Dagobah. I loved visiting his office. There was a very nice lady at the front desk who always gave me Tootsie Rolls, and once he let me sit in on the class he taught and walked around all the students.
Fun story, because this is already super long. Apparently, once he took me out to walk around the track with the rest of the college ROTC students. There was one kid who was super hungover, and I got really cocky because I made it around the track faster than he did. Obviously I had no idea and he did his best to hide his pain. Poor dude.
My dad spanked me once or twice. And I vividly remember him crying and never doing it again, because he didn’t like to hurt us. I have a million good memories with my dad. Admittedly, as I got older, they got less infrequent. But he got another job, one where he was much busier and not home as often. Sometimes he even had to travel. He pushed me pretty hard on school. I was ahead one grade when I first entered public school, and then two. He tried to get a state amendment passed so that my brother could skip kindergarten. I definitely always felt a lot of pressure to do well. I’m sure my brother did too. With Nell always being sick, my mom was often absent from the house. My dad wasn’t as good of a homemaker as my mom, and got behind on things like laundry and dishes. He tried to give us chores. My mom usually did all the chores, and we hated him for it. We didn’t like that he wasn’t as good at cooking or taking care of things. I think he resented that we missed our mom, just a little.
We still got along. As the kids got older, though, my dad did get a little harsher in punishments. He would always take away my phone or computer for days at a time. He threw a laundry basket at me once, when my room was a disaster area. Once he took my doorknob. I remember vividly once when he took away my mattress during the day so that I couldn’t sleep away the hours depressed. I was extremely mad at him. It felt unfair and extreme. But if your kid sleeps all day, what would you do?
My brother didn’t feel the same way. He constantly called for my mom to divorce my dad for things that my dad considered discipline. Maybe my dad was raised in a strict home, and my brother expected something different of a Navy boy.
My dad wrote my mom poetry after she left. She called him obsessive. He accused her of cheating on him. She called him paranoid.
I felt confused. The custody battle went on and on. I didn’t know who to side with. I felt torn between both parties. I wanted to love both my parents. I smoked a bunch of weed, and I got caught. My mom sent me to substance abuse treatment with the same therapist, Lacy, who was treating my brother’s psychosis. Even though I was over 18 and technically had to consent to go, she told me that she wouldn’t pay my rent or let me live in the house unless I was seeing Lacy. I was originally told that I had to see Lacy for 8 weeks, but after the 8 weeks were up I was told I hadn’t progressed enough and that the sessions needed to continue. (I didn’t smoke…what else were they expecting?)
Lacy sent my mental health into a downward spiral. Even though I was barely even eighteen, she soberly diagnosed me with borderline personality disorder and informed me that her treatment was the only one that would fix me. She told me that my old therapist didn’t want to see me anymore (a lie.) She sent the terrifying anxiety into my head that I might actually have bipolar instead of just depression, and just haven’t experienced the manic episode yet. (I take Prozac so this is incredibly unlikely.) Now every time I get somewhat not-depressed and goal-achieving, I get really anxious that I’m actually manic. It sucks. I told her I thought I had ADHD (I do) and she told me not to tell my psychiatrist and to just drink caffeine. She told me smoking weed would give me schizophrenia. Etc etc etc. It sucked. I had no one, really, to talk to. I got really depressed and stopped going to class. I started smoking again, a lot, more than was healthy for me. My eating got really bad again. It was terrible.
Eventually I hit the breaking point. I bought some LSD from a friend and tripped, and had kind of a crazy consciousness-existential-crisis trip that resulted in me feeling the need for a change. So at our next session, I snapped and walked out of Lacy’s office, and called my dad, who I had kind of been avoiding because of all this polarization. He agreed to help me. I went back to treatment for a few months, met my current boyfriend, went back to school, changed my major to psychology, got a really cool internship working with autistic kids, got a kitten, went to my first music festival…life is really cool and good now.
I’m really happy. I still like to smoke, but I mostly take dabs and I’m kind of into artisanal cannabis (like really high-end weed, come on, it’s kinda like beer.) I don’t think it’s bad for my health; I have anxiety and also really bad muscle tension from the anxiety, so smoking really helps ease that pain. I think I have done a really good job processing my grief with Nell’s death, even though it took me some time. My mental health is super under control. I’m sitting here with my cat sleeping next to me, in my clean room that I share with my boyfriend. I never thought I would ever type a sentence like that.
But my past still informs all the decisions that I make. And it’s especially informing my career.
Warning! This is where I actually get to the reason I wanted to make this post! Sorry for all the backstory!
I changed my major to psychology originally because I became fascinated in consciousness and perception, and secondarily because I thought it would be incredibly cool to help people love life as much as I had learned to. I got an internship working as an ABA therapist. I work mostly with very young kids with learning disabilities. It is seriously making me reconsider changing my career to special education. I think that would be a really nice way to honor Nell and plays really to my strengths and the most interesting parts about psychology to me. I do really well with it, honestly, and I think it’s incredibly rewarding work. It feels a little bit less like a “good career” than becoming a therapist. I sort of feel like I’m settling, but maybe I’m biased. I skipped two grades so I tend to feel like a lot is expected of me. But I’m starting to feel like special education is where I’m really meant to be. I’m still torn between pursuing a special ed. certification after graduation or applying for my MSW.
Thanks for reading all of this if you did. Much peace and love x
Submitted January 30, 2019 at 05:35AM by throwaway1290102910 http://bit.ly/2CXcXEu
No comments:
Post a Comment